Sunday, 19 August 2018

Hello…….I’m still alive! Sorry I’ve not posted a blog for an
eternity. Not sure where the time has gone, it’s been a busy 2018 so far. My
mum and dad came down under to visit for 2 months over Christmas where we had a
big family Cousins/Spencer Christmas at our house in Warrnambool, hosting 12
adults, 3 kids and 1 baby. It was great for both families to meet and as I predicted
all got on amazingly well!

Shortly after, my friend Carly flew in for a few
weeks, where we explored a number of Melbourne’s finest rooftop establishments
and ate and drank our body weight in good food and copious amount of wine and
cocktails!

I then had a small break of visitors before my sister, brother-in-law
and niece and nephew made the arduous 34 hour journey. It was fantastic having them all over and even though I knew my time with them was limited, fun
was definitely on the agenda!

In April 2018 I started my “proper” job since arriving in
Australia. I have had a few comical job titles in the past e.g. ‘Avon lady’ and
‘Leakage Coordinator’ but my current title definitely wins the award for the
longest: ‘Project Lead – Preventing and Managing Occupational Violence and
Aggression’ or OVA for short! In essence I am trying to ensure the local hospital
in Warrnambool remains safe for all workers. It’s definitely a challenge as I’ve
not worked in the health sector before and not implemented an organisation wide
project, but one I am definitely relishing.

We had a few ‘quiet’ months before we flew off to Greece for
Juzzy’s brother’s wedding in Patras, before having a family holiday in
Kefalonia where my mum and Grandma joined us for a few days. It was great
seeing them and fab that my 84 year old Grandma could come along for the
adventure. She thoroughly enjoyed herself and loved meeting all of Juzzy’s
family.

Juz and I then circumnavigated the Southern Peloponnese, driving 2,500km
in total. It was an adventure and great to see another part of Greece, compared
to my early 20s when it was all about the excitement of Club 18-30 in Malia and
Faliraki and what trouble we could get into! My, how I am growing up!

Since early 2016 I’ve been really fortunate that I’ve been stable
with my PH. I’ve had check-ups every 6 months and the results along the way have
indicated all the pressures are the same and to keep doing what I am doing as
it is working. I must admit though, I’ve been a bit lax of late on the fitness
side. Too much entertaining, drinking and eating has got in the way, plus now its
winter the dark nights make it hard to go out for a run etc. I know, excuses,
excuses! But I definitely have the motivation to get back into the fitness so
that’s the first hurdle.

One area I have struggled whilst having PH is trying not to
over react every time I don’t feel myself, and instantly assume my PH is
getting worse and I have a matter of days to live. God I sound so dramatic! Granted
I am better than I used to be, but it’s still an issue for me. I started to
feel unwell about a week or so after returning from Greece. Trying to keep an
open mind and not instantly jump onto the PH bandwagon I tried to explore a
multitude of options with a number of healthcare professionals from musculoskeletal,
infection, stress, autoimmune through to blood clot. During this time all the results
came back negative, which in a way was good to rule things out but also incredibly
frustrating. I genuinely started to question if the pain was all made up in
my head. After a number of ‘attacks’ during the last 6 weeks, last Sunday
evening whilst preparing dinner another ‘attack’ hit me. I know I am a bit of a
perfectionist in the kitchen and take pride in my cooking, but I didn’t realise
my cheese grating skills would create the drama that enfolded!

I can only describe the pain as “I’m having a heart attack”.
Dramatic I know, aged 34! I couldn’t breathe. I had to clutch my chest to try
and relieve it in some way. The pain lasted an hour and a half before being
given medication at the Emergency Department which instantly relieved it. As
usual for me, all tests showed nothing. I wasn’t having a heart attack. I didn’t
have a blood clot. My heart wasn’t enlarged. The CT scan showed nothing. The chest
x-ray was clear.

Then finally, some activity showed up on my ECG whilst
having an ‘attack’. “Yes” I quietly said to myself, "I’m not a fraud". I finally
have proof that there is something going on. After a traumatic 24 hours, where a
‘MET call’ was called for me (which involves about 15 doctors and nurses running
into your room at break neck pace) whilst my resting heart rate was pumping at
137 beats per minute and blood pressure was insanely high, I was then
transferred to ICU, before it was decided I would be better being transferred
to the Alfred hospital, where they have a cardiology department and also where
my PH specialists are.

I wasn’t thrilled about facing a 4 hour ambulance ride going
backwards (I get motion sickness) but I was pleased that I was going to see the
specialists in the hope they could work out what was going on. Next thing I know
the paramedics arrive and announce we need to leave now as the plane is ready
and waiting for me! Now anyone who has read my previous blogs likely knows I am a
terrible flyer and get really anxious when flying! Probably not perfect timing to
throw flying into the mix when my resting heart rate at this point on average
was 100! Anyway they reassured me that it would be better for me, as less time
to get to Melbourne and they could offer me some kind of ‘relaxant’ to get me
through the journey.

As a child I loved watching the Flying Doctors. I think that
is where my first love for Australia came from. So when we arrived at the “airport”
and I saw the tiniest plane I'd ever seen my heart skipped a beat! At first I felt like I was on an
episode of one of my childhood favourites! Then quite quickly my positivity
turned to “oh great the turbulence”. We were lucky, it was a relatively clear
day, blue skies, and whilst there was some wind it was only during take-off and landing
when we experienced the turbulence. I won’t complain though I am entirely
grateful that I was able to use the resource.

I’ve always been a difficult patient to diagnose. The tests
nearly all of the time always appear negative. It was the same when they were
trying to diagnose PH. It took multiple tests and a week in hospital for them
to give me a tentative diagnosis. This episode was no different. The first few
days at the Alfred they seemed very focused on checking if I was having a heart
attack after each attack and not exploring other options. I was getting more
and more disillusioned. In the end Juz and I ended up “having a chat” to the
doctors to try and re-focus them to look at what other options there were. It
worked, less than 12 hours from having “the chat” I was re-tested and
finally the Echo showed fluid around my heart. Along with the movements on
the ECG they then at last confirmed I had Pericarditis. It’s not something I had heard of
before – basically there is inflammation around the heart sac. They don’t know
why I got it, likely I could have had a viral infection and instead of it translating into a cold or flu it attacked my
heart. Incredibly painful but I am just
relieved, finally after 6 weeks to have a diagnosis and start medication.

I’m now home. Still in a fair bit of pain and the side
effects of the medication aren’t the nicest but hopefully in the next few days I
should start to turn a corner. I also learnt from this latest admission I am
allergic to even more different medications. I went in allergic to 3, I came
out and now allergic to 9! Some feat!!

About Me

Hi, my name is Gemsy and I'm trying to raise awareness about a rare heart and lung condition I have called Pulmonary Hypertension. This is my story on how living with an incurable lung and heart disease affects me.